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If you have deep brain stimulation equipment, artificial joints or pacemakers, inform staff at the airport

Timo Montonen

Timo’s top 10 tips for travelling with Parkinson’s

Perspectives

Author: Timo MontonenPublished: 23 November 2016

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Finnish author and campaigner Timo Montonen shares his top travelling tips after leading a team of people with Parkinson’s on the 8,000km journey from Helsinki, Finland, to the World Parkinson Congress 2016 in Portland, US

Like hundreds of other people with Parkinson’s, I planned to attend the 4th World Parkinson Congress (WPC) in Portland. But living in Finland, I was faced with a long-distance trip across the Atlantic to the US – which I decided would be better with a team of friends. Besides, it’s more fun, safer and cheaper to travel in a group.

We travelled by planes and vans to the west coast, visiting San Francisco, Los Angeles and Las Vegas on the way to Portland. The two-week journey was a success and we discussed afterwards what we could have done to make it even better. As a result, we created the following list of advice for other groups of people with Parkinson’s who wish to travel.

1. Role play

Start planning well before the trip to avoid stressful situations. Decide everyone’s role in advance – in particular, who will be group leader. The schedule must be arranged according to the slowest member of the group. Keep the budget clearly in mind and follow it. Research the different ways to travel as a group. Assess the pros and cons of using different vehicles such as aeroplane, train, ship, coach, and minivan.

2. Mind your medication

Make sure that you have all the medication that you need for the journey – and also take enough for a few extra days in case of delays. Take care of the medication schedule. Put prescriptions, and all other documents – such as a ‘Parkinson’s Passport’ – necessary for travelling, in one folder to make them easy to find when needed.

3. Be aware of technical hitches

If you have deep brain stimulation equipment, artificial joints or pacemakers, take all documentation with you so that you can inform staff at the airport. Internal metal plates can be detected by body scanners at security checks – be ready to explain any medical implants to security staff.

4. Pack light

Always remember to pack your essentials, but try and travel light. If you use a seat cushion, pack it in your cabin bag along with the other things that you’ll need during the flight. Eating while on the plane is easier if you bring your own spoon and non-slip mat that you can place under your plate. Take straws with you to help with drinking, and extra napkins for any accidental spillages, as the plane does not always have them. Ankle supports, a back support and a seat cushion will all help tired muscles.

5. Comfort over style

Dress comfortably in loose clothing. Wear support stockings to prevent the lower legs from swelling. Take comfortable shoes that are easy to put on and take off. Bring warm socks or slippers on the plane with you to wear when walking up and down the aisle for loo breaks.

Timo Monotonen and team

6. Queue jump

Inform the airport check-in staff and the plane personnel about the condition of your group – that you cannot stand for a long time in queues, for example. It’s possible that you may be able to ‘fast-track’ your way to the front of queues. If you use walking aids and/or wheelchairs contact your travel agency or flight operator in advance to ask for extra assistance at the airport.

7. Less pain on the plane

Remember to stand up and stretch regularly while on the flight – bend the knees, stretch your legs, rotate your ankles, stretch your back, bend your upper body from side to side, raise your hands above your head. When it’s time to leave the plane remain, in your seat until the plane is almost empty – it’s no fun to stand and wait in a crowd.

8. Fast food

Try to eat breakfast in your usual manner. When the group is on the road, having lunch can take a surprisingly long time, as you have to find a restaurant, order, eat and get the bill. To save time, eat a packed lunch during the day and have a sit down dinner in the evening.

9. Rest and focus

Start mornings in peace. Remember to take rest breaks during the day. If the group is lacking energy, leave something out of the schedule to focus on the most important or most comfortable option. It’s OK to take a day off from the planned itinerary if the group could benefit form a rest day.

10. Take care of the team

Take care of all members of the group. Make sure that all are able to cope with the schedule. Work creatively according to the situation, but don’t assume that all will follow the plan. Don’t leave anyone alone. Make sure you’re prepared if there is an emergency. Remember, worrying too much about Parkinson’s disease will not help you or your team.

Above all, enjoy the trip!

Timo Monotonen and team at the World Parkinson Congress, September 2016

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”